The Journal – 2012 to Present

Thursday 12 January 2012

The joy of my kindle! Browsing the free books, I came across Practicing the Presence by Brother Lawrence. How extraordinary that the words of this simple, gentle monk who worked in his monastery’s kitchens 400 years ago can reach out to me in the C21 and still speak to my heart. Not only that, but there is a web site devoted to reflections on him: Am struck by the similarity of Brother Lawrence’s striving to remove from his life anything that could stand between him and God and Buddhist effort to live free of attachment to wants, objects etc.

I read Brother Lawrence on waking, and although I do not agree with his beliefs on our innate sinfulness, his goodness and simplicity illuminates my day. I find myself stopping throughout the day and trying to bring my attention back from the mundane, often ironically through performing mundane tasks like peeling carrots!

Today I read his biography and found that he suffered terrible back pain all his life after an injury to his sciatic nerve. Yet, he was always so joyful. When my back is bad, I feel his presence and it comforts me.

Tuesday 17 January 2012

Have been trying to live like Brother Lawrence. The problem is I don’t know how to live in perpetual conversation with God – or to love him continuously. I do know that for me living in an open state of exaltation does not work. It blows all my fuses. So, after a lot of ruminating, an answer came to me: live every moment kindly. Kindly not only to others but to oneself, to everything including machinery! Have been doing this consciously for a few days and it feels blessed. Not a patch on Brother Lawrence, but the best I can do at the moment.

Wednesday, 18 January 2012

It is a year since I saw a surgeon for pain relief. I was hoping that he would do an anesthetic injection into my sacral area as that is always where the pain persists.

Instead, he said there was nothing he could do – he thought there was nothing wrong with the sacrum, an opinion with which both my chiropractor and physio disagreed. He prescribed me a metal “chair back brace.”

I took one look at it on line and burst into tears. As I wryly remarked to my husband “I am too old for a chastity belt.” Also it would have made me immobile and forced me to sit upright, the position that causes me the most pain.

At that point, I could not sit for very long, couldn’t even move my spine enough to dust furniture – not my main aim in life, but frustrating to be so useless. My life consisted of moving around a little and then lying down. Reading anything more than a lightweight paperback hurt. Pain was a constant. My GP talked of wheelchairs and round the clock narcotics. She also warned me that even with narcotics I could not safely do much more.

I refused the narcotics as I have friends who have gone that route. They ended up needing stronger and stronger drugs. I compromised on a more flexible brace, though with reservations as it would weaken my muscles.

So today I look back with amazement at my progress. Today, I polished all the furniture, washed the bathroom floor, prepared lunch and put supper in the slow cooker, and did the ironing. Later I drove to several stores, walking round and standing reluctantly in line. Came home, lay down for half an hour and then prepared vegetables and snacks. All with no pain killers and without a brace.

Seems a paltry list my most people’s lights, but huge by mine. And , of cours, there are many days when I can’t do nearly as much, but this was a good day – and I luxuriate in it.

Afterwards, I had to sit in my zero gravity chair with a hot pad at my back and an ice pack on my ankle, but that’s fine. Makes me so hopeful for the future.

Have to credit the improvement to Open Focus meditation which gave me a narcotic-free way of lifting pain and also enabled me to get out of the trough of pain. It works by smoothing out the brain waves which go out of synchrony in pain. Although I still have pain when I do very much, and Open Focus doesn’t work well in social situations, it has made it possible to see pain as temporary, rather than as my identity.

Next, I credit Low Level Laser Therapy (more info) which calmed down the inflammation so the sacrum could settle. It works as a pick-me-up as well after things like a transatlantic flight. Because of my surgery, all the stress of movement is taken on my sacrum, which gets irritated and flares very easily. But I can now do strengthening exercises without causing a flare up. It does put me back, but needs frequent repetition as soon as I do something, like sitting on a soft sofa, that frames me.

Chronic pain persists because the brain gets hypersensitive to pain signals. I saw on CBC TV that the brain is reported to change permanently. Because I seem to be getting good results with my IBS hypnosis CDs, I wonder whether the same treatment would work for chronic pain. It is a similar reaction: in both cases the nerves get hypersensitive after an assault. Also, the digestive tract and the back pain signals travel the same route, which is why if my digestion is out, then my back follows.

I checked the site and they do a program for Chronic Pain. I have downloaded the tracks and will start them as soon as I finish my IBS program.

It, of course, prompts (I will not misuse the expression “begs the question” which actually means a circular argument, not a question begging to be asked!) the question of where is our free will or true choice if so much is genetically programmed? The genes have to be prompted environmentally in order to be expressed – epigenetics, a true compromise between nature and nurture.

I would like to feel that there is still free will, that we are still able to make choices, from character that we have chosen to strengthen, rather than our lives being preprogrammed reactions. Otherwise, what about courage? Endurance? Hard won victories, when one strives to conquer weaknesses?

That led to psychologist Elaine Aron’s work on highly sensitive people who make up about one in five of us. We (because when I did the test I answered yes to almost all the questions) have more sensitive senses. We react more to noise – yes, I find noise very stressful. We apparently take longer to process information but are more sensitive to subtle detail. Interestingly, we are not necessarily neurotic or introverted. Most interestingly of all, provided we do not have highly stressed childhoods, which seem to turn on all alarms, we do better in life than the less sensitive. And we are not particularly neurotic. Wow!

Thursday 26 January 2012

Have always wondered/felt it wrong to think about how one feels. Protestant self denial? I was always told it was unhealthy to look too deeply inside myself, but surely the point of life is to participate in the world, to live as a good animal. I have always thought that God needs us to make His vision manifest – though He must be disappointed with what we have made of it. How can we do that without using our senses and interpreting our experiences through our deepest selves. We may see the world wrong, but we are all we have to look through.

Saturday 28 January 2012

Last night we watched South Pacific – a wonderfully limbic experience. While I find Mitzi Gaynor brashly coy, France Nuyen as the young Polynesian girl is heartbreaking. I thought about all our different love stories and how narrative is always sharply different, as if no one else has ever experienced this before, yet deeply the same. Reminded me of genes expressing themselves resolutely through the generations. Is love like a stream, taking different routes, yet always the same? Are we just vessels allowing this love force to pass through us? And is the integrity of our vessel important, that love is not debased, but as honest as we can make it?

Then this morning, I was making soup and listening to a CD, swept along by the rhythm and joy. These are the moments that one feels purely alive. Is part of the skill to let the joy pass through and be a vessel, or perhaps conduit, that allows life to express itself?

Sunday, 29 January 2012

Again listening to musicals while making batches of hummus. Although people sneer at easy music, I find that it is those tunes that I turn to in life’s most vivid moments. Perhaps some of the deepest feelings are experienced limbicly, below the level of rational thought. The young Polynesian girl running through the forest to meet her lover to “Younger than Springtime” expresses exactly how I felt running to meet Mike back from sea. In the early morning, having dropped him off at the airfield to fly aboard his ship, driving home to a darkened house, rumpled bed and a long day ahead, I sang “Whenever I feel Afraid” because you can’t sing and cry. “Shall we Dance?” I sang to my baby daughter as we twirled and dipped and laughed. Certainly my deepest moments were not to Mahler!

Sunday 5 February 2012

Reading Globish by Robert McCrum, who wrote The Story of English. He points out how being islanders makes one psychically different. And, yes, that was what I found so strange on emigration to North America: the vast space. I didn’t feel a comfortable edge to my life, defined boundaries. It all stretched away huge and undefended. I also found it unsettling to holiday on a lake. We were used to going to the edge, to the sea, where England ended and there was a moat between us and strangeness. Yet now when I go back there, I feel enclosed and claustrophobic.

Is part of the difference between the English and North Americans that England is defined by its shores, to be defended and also a safe haven from which to sally forth and dip a toe in the wider world? Whereas North America is built on expansion, always pushing the boundaries.

I was also very struck on arrival by the importance of neighbours and neighborhoods. In England, particularly the south, the emphasis is much more on privacy and minding one’s own business. One friend, returning from a holiday in the UK, described the English all gardening with their backs to each other. And one of the War Brides I interviewed for a story said coming to Canada was “like taking off your corsets”.

Monday, 6 February 2012

Have been reading a lot more from Brother Lawrence and am noticing a difference in myself. I now find whenever I feel irritated or negative that I am making a conscious choice to try to remain connected to God’s peace rather than feel right, vindicated or self-righteous. A huge debt to Brother Lawrence.

Tuesday, 7 February 2012

Went for a thyroid check up. My latest ultrasound shows the nodules on my thyroid have changed and I should have a biopsy. After that, if they are malignant, then my thyroid will be removed; if, like my last biopsy, they can’t get a reasonable sample, and the result is ambiguous, then she will refer me for surgery. But the decision will be mine.

If I have the thyroid removed, am afraid of the process of recalibrating my meds as my thyroid has been very difficult to stabilize.

Came home feeling slightly stunned, but later this mellowed into acceptance and peace. Felt a great kindness surrounding me, cradling me. Acceptance of what comes next. I asked my husband if he was worried and he said, “Oddly enough, no.” Which is what I also felt.

Wednesday, 8 February 2011

Finally, my appointment at the pain clinic came up – after 15 months on the waiting list! Had found message on answering machine last Thursday saying to call the clinic. Tried on Friday and Monday.

Finally got a human who said that woman who makes appointments is only in on Tuesday – Thursday. Put me through to extension where got answering machine giving an email address. Unfortunately, her name began with Mc or Mac and she didn’t specify which. Tried again and got a very pleasant woman who had no trace of me. Told to phone back later.

Finally, got the right person who said she had shredded my application. Why?! “You told me you didn’t need to come.” “But I have never spoken to you before.”

Well, she said, I could come tomorrow, but she had no notes for me. Could I write a medical history? Felt as if have fallen off a cliff.

So arrived today and filled in massive, detailed questionnaire. As usual, questions where the alternative answers offered didn’t match what I needed to say! For example, yes, I am down sometimes with pain, but am overall very cheerful. No box for that!

Saw two very nice physios who examined me and took me through the questionnaire, so was able to amplify my answers. Then after a wait, the doctor came in. Very discouraging as he was very forthright and didn’t like questions.

He told me he would give me strong NSAIDs, which I didn’t want as my stomach has been so badly damaged by them and it was voltaren that triggered my celiac in the first place. He grew quite heated when I didn’t want them even as suppositories because the increase the risk of heart attack and because, also, even though they do not pass through the digestive tract, they do thin the mucosa.

So he gave me statex, which is morphine. When I sounded uncertain, he got heated again and said, “Anyone can have a reason not to take anything! It will help you sleep and improve your mood.”

I replied (and it was on my intake form and in my notes) that I do not have any pain at night and sleep well. I am not depressed; my mood is up most of the time. Also, I do not have continuous pain; it is caused by sitting and standing.

“Oh,” he said. “That is a very good reason.” He agreed to give me statex to take when needed to give me a pain-free window so I can do more things. He said, and I liked him for this, that he wanted to give me a wider life and our first goal could be to be able to go to a movie.

He is also going to start on spinal injections next Wednesday.

Thursday, 9 February 2012

Started the statex. He prescribed 10 mg, saying I can take up to 30 mg. every 6 hours. Was completely zonked by it. Morphia had been fine after my broken ankle as it was very pleasant being in a drunken haze through the pain, but it is not OK if I want to to be compos mentis.

Friday, 10 February 2012

Halved the statex tablet. Still zonked. Could be partly that I am on Benadryl at night as have gone completely deaf in my right ear following a cold. My GP said Benadryl should clear the fluid in the ear. I did separate the statex and Benadryl by several hours.

Pharmacist suggested I asked for morphine syrup instead so I can calibrate the dose.

Saturday, 11 February 2012

Tried 2mg. Statex – still a bit woozy. My husband reminded me I have low tolerance for alcohol and only one glass makes me slur my speech – such a pity as I like both the taste and the conviviality. The kids would say, “Mum’s gone wobbly.”

He gave a show of 1960s vintage naval aircraft and carrier operations. Strange to find we are vintage. Not long ago, I found a novel at the library described as “an excellent historical novel” – it took place in my life time! I went over to see everyone into the condo community room – very convivial, male get together. I didn’t stay for the show as it seemed important that they could have a male ge-together – and he could certainly use different jokes if no women present. Anyway, I couldn’t have sat through it.

Sunday, 12 February 2012

Reading The Secret Life of Pronouns: What Our Words Say About Us by James Pennebaker. Very interesting, but what caught my eye was his account of how major traumas like earthquakes, 9/11 or the Mount St. Helen’s volcano drew communities closer together and brought out the best in them.

Survivors of the Mount St. Helen’s volcano, although they lost a lot, apparently reported being glad it had happened in their life times. When a bonfire collapsed at the University of Texas, the resulting deaths of 12 students led to a closer community that year and better overall students’ health.

Very much mirrors my feelings when my mother died: that I had gained something precious through it.

Somehow that makes sense of my feeling that in spite of my pain etc. I am enriched and blessed. Perhaps because repeatedly dealing with it, and all the feelings and often despair, has the same effect, making one aware of what is precious. Surely, in some strange way, I am blessed to have this constant reminder of what really matters. Hold onto this in the next down moment!

Tuesday 14 February 2012

Took 1 mg statex at 1.30 and a further 1 mg at 5.00. This worked and was able go to the Condo Valentine party and sort of stand, half perched on a table for 45 mins, so an improvement.

Monday 20 February 2012

Went out to drinks with friends. Took 1 mg two hours beforehand as, although the wooziness starts very quickly, no pain relief for 2 hours and then only for 2 hours. They were incredibly kind, but deep sofa and it didn’t matter how I sat, or squirmed, I was miserable. Left after 2 hours.

Feel it makes me feel too unreal to be viable. If the whole point is to have a four hour window in order to be able to see friends, it is counterproductive to be zonked.

Tuesday 28 February 2012

Have been thinking a lot about how life could be lived either from above, where we know who and what we are and make choices from that, or below, where life happens to us and we cope as best we can.

There’s a fine line, though, between living from above, a self-directed life, and living either a self-absorbed life or a grandiose, unrealistic life. I want to live in God’s light. Each day, I remember Brother Lawrence, and try to catch the moods and thoughts that separate me from God. More and more, self-satisfaction seems cheap and graceless. So how to find a balance and live from above, yet in touch with God? Perhaps the answer is to know one’s integrity and live from that strength. Very similar to NLP’s (Neuro-Linguistic Programming) teaching on living congruently, from one’s resourceful self.

Wednesday 29 February 2012

More on living from above. It puts a completely different spin on coping – or, perhaps, “coping” in itself is quite the wrong word. It implies a desperate, bogged down struggle – from below. Seen from above, I can acknowledge my strength, purpose and determination. I can seize the brush and paint the picture, even if I can’t control the content.

I have always wondered is life is like some huge tapestry or musical work in which my individual note is essential, however small the stitch (to mix two metaphors). Even though I or you are almost insignificantly small, there would be a minute hole in the work, something lost that only we can give. As Sarah’s Song says, “It is up to us to make sure it is beautifully played.”

Today went back to the Pain Clinic for a second series of injections – a pincushion effect. This time much more painful. I think he made a wider ring of shots. Certainly, he seemed outside last week’s mercifully numb area, the part that can’t even feel capsaicin cream.

Felt very strange, unreal and weepy afterwards. Odd, as I has no reason to cry and was not aware of any distress, but I would have been afraid to drive and my chest felt tight. I called the clinic to be told this is a known reaction and the doctor probably put it in differently this time. Seems rather haphazard to me.

So now for the next two months will have weekly injections while they observe me. Then, in May, they will do one under x-ray to check they have it the nerves right. If that goes OK then they will ablate the nerves. This should last several months till the nerves grow back together, when they will do it again. Am not sure how often they can do it.

While waiting at the clinic came across an article in Chatelaine. Debs Gardner Paterson (article) describes how after a car crash adage 25 she woke up in hospital completely paralyzed, locked in her body, even her vocal chords paralyzed. But I wasn’t alone in my prison, she writes, “God was there with me.” And I knew what she meant. Though never in straits like hers, I also know when, my spirit in ashes, my body exhausted, God’s grace cradled me.

God’s love fills me

God’s joy (ducklings, clouds) delights me

God’s right action guides me

God’s strength supports me

God’s wisdom enlightens me

God’s mercy comforts/forgives me

God’s peace soothes me

God’s grace surrounds me

And I pluck phrases from it during the day, smiling at a hedgerow of sparrows, relaxing into a merciful cloud.

Thursday, 1 March 2012

Had my fine needle aspiration biopsy today. Very kind radiologist who said he didn’t see anything very worrying about the thyroid tissue, but cautioned that he didn’t know my full history. He did say that if (15% cases) he couldn’t get a good sample, he would suggest a second biopsy rather than radical surgery. Am grateful and surprised as my specialist had mentioned cancer specifically and said if in double take it out, which had made us feel it must be serious.

Was sitting waiting for my husband in the hospital entrance at a table where a young woman was sitting. We couldn’t have been more different. She was young and black; I am a decidedly older ex-Brit. I asked her if she was here for a procedure and she told me she was with her father who was having an ultra-sound.

It was not serious, she thought, but added, “It is in God’s hands.” We looked at each other and I touched her arm. “God is always with us,” I said and she looked deeply into my eyes. There was a peace and grace about us – and we understood each other deeply.

Tuesday, 13 March 2012

Still waiting for the biopsy results. I asked that they be faxed as the hospital was going to mail them! Still, that doesn’t mean they did it.

Funny, a few weeks ago, we had a run of everything moving forward each day, whether it be doctor’s appointments or builder’s estimates; now we seem to have hit stagnation on everything.

Am finding it stressful, not overtly – I am not consciously worrying about it, but there’s a feeling of waiting for something, being on my toes ready to respond.

Tomorrow I go back to the Pain Clinic for my weekly Marcaine injections into my back. The first one worked really well for five blissful days; the second was spread wider and hurt like hell and making me feel light-headed and weepy. It lasted only two days. The third seemed to be a lesser strength and lasted 24 hours, left me with visible bruises and really ached wearing off.

We had three social engagements over the week. I arranged it for two of them that our friends came here for drinks first, so I could use my zero-gravity chair, but I could only manage sitting just over an hour at dinner. When we went out to Sunday lunch, I managed to sit for an hour at table, but had to lie on the sofa for the afternoon, and it still really hurt.

Now to compound everything, Sandoz who makes all the injectable pain killers and a anasthetics has closed their factory due to quality control problems and there is a critical shortage of drugs. A friend had a knee replacement yesterday and there were no injectable pain meds, so she had to have tablets, which, thank goodness, were enough.

So I am afraid the clinic will regard me as elective and stop the treatment. I would be happy to wait till the drugs are readily available, so someone in greater need can have them, provided I am kept on the list. I am afraid they will just take the easy way out and tell me it isn’t working so they are stopping treatment.

The injections seem to vary in placement and strength and I know they are working to find the right nerves, but even if I am responding to Marcaine less well, that doesn’t mean cauterization wouldn’t work, which is what we are aiming at. I have an early May appointment for the fluoroscope, which I gather is very heavily booked, so don’t want not to be ready for that.

Feeling very stressed at not having control over the doctors’ decisions, as I am a proactive person. Thought there must be a better way of looking at things – a bigger picture, a higher path to take. There are people facing much harder things, people facing death – and they find a way, often of stunning grace.

I cannot shut my eyes to their pain – as John Donne said, “No man is an island.” We are all part of a larger consciousness. There must be a larger canvass, a higher grace. I strain to see it.

Wednesday, 14 March 2012

Pain Clinic. Relieved to find that so far there is enough Marcaine, though I am asked to try and get it from my pharmacy, if they have any in stock, to try and conserve the Clinic’s supplies. The drug for the fluoroscope may run out, though, so just have to keep,my fingers crossed.

Another 10 needles today. I asked the anesthetist if he had given me a lower dose last week as it lasted only one day and he replied, shrugging, “I might have done.”

Doesn’t he know? Hasn’t he got a record? It doesn’t inspire confidence.

Back very battered feeling, but numb. Very cheered by a neighbour running across the courtyard, thanking me for recommending Low Level Laser Treatment (more info) “It has given me my life back. I can golf again!”

Thursday, 15 March 2011

Back very painful, ironically, worse than the pain it is meant to prevent. Felt my chest tight and breathing slow, and felt overwhelmed and unreal. Called the Clinic who say no more injections, but to come for a consultation on where to go next on 21 March.

“Is there anywhere to go?” I asked.

“Oh, lots of places. We are at the beginning?” she responded cheerily.

OMG – weeks of this – but it’s my only chance at pain control, so I must take it.

Was meant to have a filling at the dentist, but felt almost afraid at having more local anesthetic. It was to late to cancel, so went in and asked what to do. They looked at me and said, very kindly that I should come back another day. Great relief!

Came home and phoned my endocrinologist for my thyroid biopsy results. Answering machine, so what’s new: she is on holiday till 20 March. Well, at least then the biopsy will be in – when they have caught up and read it.

Saturday, 17th March 2012

Pain still strong from the anesthetic injections, ironic when felt I good on Monday and Tuesday before the latest round on Wednesday. Went to my chiropractor yesterday, who gave me Low Level Laser Therapy – one session can’t fix it, but should help the inflammation. He said the whole lower back had flared and was locked with little movement. He wound me up like a pretzel and crunched me, with a huge cracking pound each side – rather like trees cracking in winter when the sap freezes.

Came home feeling limp and as if I had been beaten. Took painkillers and used my zero-gravity chair which got me through the evening as we had a friend over for supper. A most rewarding and stimulating evening.

But today, very bad. Eyes felt swollen with pain; it hurt to move, sit or stand. After lunch took Tramadol which made me very woozy for two hours, so lay down till felt human again. Pain relief only set in after the two hours, so know I must allow two hours of lost time if I use it.

While woozy, lay in zero-gravity chair (more info) which took the weight off my spine. As always with severe pain, couldn’t think coherently. Impossible to read – also weight of book hurts my back. But can play patience, aptly named, on my iTouch (thank you yet again, Steve Jobs).

Cards are always soothing, perhaps it is making order, when my neurons are crazy and confused. Anyway, it occupies the analytical left side of my brain and prevents me from thinking – always helpful. And, engaging the left brain is the best way to turn off the emotional, depressive right brain. I remember teaching my students in stress seminars:

If you feel anxious or emotional, do math – engage the left brain and turn off the right

If you feel time stressed, sing – engage the right brain and turn off the critical, time-conscious left

It is difficult to feel optimistic when pain-puddled, but must hang on to the knowledge there are so many sunlit patches, even if at the moment it feels as if I am in a very shadowed forest. Must try and see the wood, not the trees.

Sunday, 18 March 2012

Watched a documentary on OxyContin addiction, which was horrifying. I has always been very afraid of starting down the opioid path, which had led doctors to be very scathing, as if I were not cooperative, as if I wanted pain. Now looking at the wretched addicts, I know I was right. Sometimes I would wonder if I were mad, sticking it out with such pain, when a pill might cancel it.

I don’t do well on opioids – just two Tylenol 1s will make me woozy. Am just as bad on alcohol – one glass of wine and my words slip – and caffeine is worse. A cup of coffee and I am ajitter.

But this morning when I woke up, I decided to try Tramadol half dose. I have been given the lowest dosage, 37.5 mg. and told I can halve the caplets. Took it at 7.00 am and didn’t feel woozy – is it time of day that makes the difference? Was good till 12.00 when I took an additional 1/4 caplet. Woozy for two hours then the relief kicked in and was good till about 7.00 pm.

Had a doctor friend round for drinks. We were discussing the Oxycontin debacle and in passing, because it was certainly not my intention to ask him a professional question, I asked him about Tramadol. His immediate response was that it worked differently (I didn’t gather quite how) but was very low addiction risk.

Monday, 19 March 2012

Reading Breaking the Spell: Religion as a Natural Phenomenon by Daniel Dennett. Haven’t been reading much for days while I struggled to learn WordPress and publish this blog – hopefully the mental exercise will stop me going doolally for a few years.

He talks about a group of atheists and agnostics trying to find a name to describe them – settling on “bright” which caused a lot of offense to those believers who’s felt they were being designated “thick”! It doesn’t feel a good term to me as it implies radiance, and all the atheists I have seen interviewed seemed to lack any luminescence.

Which made me wonder if there should be a term for those of us in the third stream, neither atheists, nor adherents to a strict religion. Those of us who know there is something bigger and deeper, who have felt the whisper of the eternal and glimpsed a radiance beyond our ken. Those of us who answer like Jung from our bones, “I don’t believe; I know”. Even when we can’t articulate just what it is we know.

Wednesday, 21 March 2012

“I choose to live above and beyond the space of pain.”

Pain clinic. The doctor was kind, resigned. We have come to the end of the road. He had no alternative drugs to offer. Any opioids space me. I have to think about thinking, painstakingly. And there is no joy in me. It is a trade off I cannot make. Without fire, joy and enthusiasm I am not me as I know myself.

He then went over the injection options. Because my back flared so badly with the anesthetic injections, he is worried about its reaction to ablation. He says I am so thin that he is concerned whether he could get the nerve safely. There’s no wiggle room. He can only work on the sacral nerve as the fusion above makes it impossible to see where he is going.

I can take the risk on ablation, which on a normal back leaves the patient in pain for several days, let alone what it would do to my hypersensitive back. There can also be permanent nerve damage to adjacent nerves – and I am so small that it would be easy to touch another nerve unwittingly.

So I came home, in heartbreaking sunlight. Now, I have to decide HOW to live. I meditated and it came to me that there are still, and always, the small joys – and the sunlight bathed the budding trees. A group of women walked laughing beneath my window, and I could be glad for their light heartedness in the freshness of spring.

I meditated with my pain CD, choosing our cottage, now sold, and in my mind lay on the deck beneath the birches, walked the front beside the vines, down onto the lawn, warm beneath my feet. As I reached the affirmation part of the tape, I chose, “to live above and beyond the space of pain.”

It has to be possible that my being is unmired by pain, most particularly by my awareness of struggling with pain. I must find the sunlit meadow beyond. It’s almost as if there’s a choice. Very difficult to make, like pulling one’s foot out of sucking mud.

It is possible to live on the level above coping, where my true sprit lives, the part that is joyous and quenched by opioids. I can see it for a few moments, and then sink down to the place where I am overwhelmed and tearful. But I will try to keep reaching the plateau above, like a mountain meadow. To see the beauty and leave behind the drudgery of coping.

It is really important not to fight, but accept. Not to “kick against the pricks.” Because when I try to be forcibly brave, I exhaust myself in the effort and end up worse off. I have to reach a place where I am at peace and the drama is not played out. Be genuinely happy for another person, not gritting my teeth,trying not to mind the contrast.

It’s no good trying not to mind; I have truly not to mind.

Today, I felt real pleasure seeing the group of women laughing together and happy emailing my cousin when she sent a picture of her newborn grand daughter. It is as if when someone is happy, then each of us is also happy. Osmosis – or perhaps the quantum effect. As John Dunne wrote, “No man is an island”. The fact that joy exists is enough.

Later this afternoon, I go to my GP, who hopefully will have the results of my thyroid biopsy. Strange to be floating in no man’s land with three possible paths ahead:

Clear and benign – just continue watching

to see – possible removal of thyroid or second biopsy

Malignant cells – thyroidectomy

Always strange waiting for something that is already decided – and doing a sort of mental leapfrog to tonight when I will know which way the dice fell.

Thursday, 22 March 2012

The biopsy result was negative – huge relief that that possible path is closed. No surgery or radiation, though I imagine the 5% future cancer risk still applies and we will have to go on watching the nodules.

What I have to ask is why doctors so often tell one the worst before they really know the situation. In this case, all she actually knew was that my ultrasound had changed, there was a 5% chance of cancer and if it were malignant, then a further 1% of those malignancies are really aggressive. However, she talked matter-of-factly about cancer, saying if the biopsy were inconclusive, she would recommend removing the thyroid anyway.

All I needed and wanted to know was that a biopsy would be advisable just to be sure. All further info I could be told if necessary. The fact that she was so up front about cancer when I knew of the 5% risk already made it sound as if some other factor had put me into another risk bracket.

This seems a common stance from doctors. Some years back, following an MRI, my husband was told he didn’t have a brain tumor but he did have something very nasty behind his nose.

“I’m sorry,” said the doctor almost with gusto, “but I tell it like it is.”

In the days it took to get to the specialist, we lived through possible death and bereavement. Almost shaking with fear, we sat in the specialist’s office.

He laughed, “it’s a polyp!”

Does medicine never take account of the damage to patients from fear and stress? A nocebo (opposite of placebo) effect – shades of witch doctors! I remember reading of a cancer patient who was given a new drug and made great progress, until he read in the newspaper that it was ineffective. He promptly went downhill, till his doctors, while continuing the same drug, told him it was a new, better version. He improved again, until he overheard someone saying the drug was no good. He relapsed and died.

There are also studies showing that patients taking identical drugs have better outcomes when the doctor believes they will work. So if you take the nocebo effect and compound it with the physical effects of stress, Western medicine must often be counterproductive to healing.

Thought much more about being above the space of pain. Rather like being in a plane above the clouds. I remember flying transatlantic to my mother’s death, beside a man flying to his brother’s. We talked spasmodically and comfortingly. As we circled in soaring sunlight, we could see England gray and rain-shadowed beneath.

“We must remember this in the days ahead,” I said to my companion. And in the grim days that followed, the metaphor of sunlit space, cloud-softened, stayed with me as something I could one day reach again. An affirmation that life is good.

Georges Duhamel asked whether it is worse to be unhappy on a fine day, which mocks your grief, or a wet gloomy one that mirrors it. I have often pondered that, particularly when driving through budding hedgerows and warm brick villages to my mother’s funeral. Definitely sunlight – it promises a resurrection of the spirit. I remember when very ill at 20 deciding that I would like one day to die in the spring when there is hope.

Friday, 23 March 2012

Reading Breaking the Spell by Daniel Dunnett. He recounts his small daughter crushing her finger tips. To comfort her pain while they drove to Emergency, he told her to push the pain with her mind into his hand. It worked! They had to repeat it, but it got them to the hospital.

That reminded me of Open Focus which I have used sometimes very successfully (see info page). In Open Focus, you are enlarging your focus, like widening a lens, so the pain becomes one small pixel in your mind’s picture. You could adapt pushing the pain out to dissolve it into the atmosphere.

I have been trying this with my sacral pain today. It seems to work, though only for a short time, but it is easily repeated as you go about your day, whereas Open Focus needs you to withdraw and concentrate.

Was out shopping, in and out of the car. It is alwaysvreally hard walking round stores on hard floor – and slowly too. We had to stand and look and discuss, so my back was really bad. I retreated to the car, waiting for my husband. Tried very hard to push the pain out of my back, which is really a form of Open Focus, as I could visualize the pain leaving and drifting away, widening my focus. At the same time, I kept saying and trying to feel, “I dwell above and beyond the space of pain.”

It didn’t totally stop the pain, but made it feel less deeply connected and put me in a better place to be. My focus was widening, rather than shrinking protectively. It gave me some relief and I could do on the fly.

Sunday, 25 March 2012

Watching People Will Talk with Cary Grant. It was slower paced than modern movies today, so I was able to see more clearly why they took shots and what effect they got. Was again struck with how like performing is to writing. Actors use pace, pause and emphasis the way I choose words.

Remember watching Tom Kneebone performing Noel Coward years ago. We were in the front row, oddly enough with a baby blue jay we had rescued and which needed constant feeding. It joined in with gusto, squawking loudly a couple of times in emphasis. We were close enough that I could really observe Tom and what he did with emphasis was uncannily like my working with words.

At the end of the movie, Cary Grant was conducting Gaudeamus Igitur. He was alight with joy. I hope he was drawing on his own experience as he didn’t have a very happy life overall. It made me think again that “no man is an island.” And that joy is not only contagious, but the very fact that one person is able to feel it so completely raises the overall temperature, so to speak, for us all. Must be why we get such pleasure out of watching children.

But it has to be genuine, innocent joy, like the wonder of a child discovering rock pools, not the quickly satisfied greed of “I want.” It has to come from our Essence not our ego.

Have just been reading Radiance: Experiencing Divine Presence by Gina Lake. She gives the clearest explanation of the difference between the flow of spiritual serenity and the scratchy, driven, self-centered ego drive I have read. She clarified the conflict I had for years between what I felt was “being” and “doing.” I could be in either one state or the other, crossing activities off a to do list, feeling blinkered against deeper life. Or walking on a beach, looking at a sunset. They were two different modes and seemed impossible to merge.

When our kids were young, I worked as a writer and speaker during their school year, which meant I systematically would call people to see if they wanted workshops etc. It never worked half as well as when, during the summer – in “off-mode” I would suddenly get a feeling to call someone and those calls always brought work.

I think the same thing was working during 9/11. I never thought God would warn or save special people, but do believe that those who were tuned into their intuition may have picked up something caused them to change their usual routine. I read of research, can’t remember where, that found that on days when trains crashed, the ridership was much lower than normal, indicating that somehow, a proportion of regular passengers had followed their gut, even if they had not done so consciously.

Wednesday, 28 March 2012

Watching an episode of Coronation Street in which a character was in a state of drunken despair. Realize I have always been afraid of reaching a point in life where there was no point in continuing. Similar to the fear of pain I had in the final stages of labour with one of my children, where I could see a frontier approaching where I would no longer be human, but just an animal in a trap.

This old fear licked the corners of my mind like a malignant flame. “I am willing to understand,” I said. And reached for my book, which happened to be Modern Buddhism: the Path of Compassion and Wisdom by Geshe Kelsang Gyatso.

Talk about getting an answer – in the first few pages, he pointed out that when things go wrong we think the situation is the problem, when in fact it is our minds that are the real problem. And, if we approach the vicissitudes of life peacefully, they are not problems.

Yes, I thought with recognition: it is the emotional charge we attach that makes them unendurable. The same as pain – it is how I describe my situation to myself that makes the pain a crucifixion or a dull rumble in the background of my identity.

Thursday, 29 March 2012

A friend came to coffee – deep and enthralling conversation for two hours. She made the interesting observation that when she needs grace or strength from God, she never asks for it.

“If I ask, He sends me a tough situation that makes me demonstrate my strength to myself. Instead, I thank for it.” Then she finds she gets it.

Reminded me of the wartime food parcels from Canada. The beleaguered English were not allowed to ask for specific items (all overseas mail was censored) – that would betray how desperate the situation was. Instead, my mother would thank for razor blades or whatever she needed and in the next parcel, they would be included.

Also that one should never plead, for example, a sore throat as an excuse – sure enough, the body will obediently produce one.

She then asked me how I got above pain etc., could I give steps. Which bewildered me – it doesn’t feel as orderly as steps, more a lumpy plod uphill. Yet, I am further ahead than last year and I am almost always happy, with periodic plunges into despair. Yes, I sometimes weep with weariness at dragging my morale out of the mud, but most of the time now, I am deeply happy.

Sure, there are lots of things I can’t do. A friend said casually, “Next time come to us.” So simple, yet so difficult: what’s her furniture like? Can I sit on any of it without my back going out? If it hurts too much, will she have a sofa I can lie on? How many people will be there? Will they be occupying the sofa? What food will she serve? Will there be anything gluten and milk-free? If not, can I bring something that will blend that I can eat? Will everyone else eat it or contaminate it before I get any? How can I do this without being a nuisance or too difficult, so next time I get left out?

But, rather as I found after several gluten-free months I didn’t miss cookies and cakes, I don’t really miss many of the activities that fill my friends’ lives. (Yes, I know there are gluten-free cookies etc., but my digestion has been so damaged that I can’t digest them.)

So, what could I answer her? It is not so much what I did, more how pain tempered me, beating sparks off me, moulding me. But I have learnt that to survive and have a life that is meaningful to me:

I must watch the place where I am, where I have my being. It is not so much forcing myself to be positive, which just doesn’t work – feels like being bullied – but positioning myself psychologically in a place where I am not thinking in negative terms. It is vital that my self-talk is not allowed to meander into misery. Important not to ruminate. Sometimes difficult as I can’t do mood changing things like gardening, turning out a closet or even burying myself in a computer.

And always remember that in this actual moment I am not unhappy. If I look inside I am not unhappy. It is only if I tell myself how bad it is, how it has always been bad and always will be – stretching away and murkily downhill into the future, that I am desolate.

Which takes me down another path, the work of Martin Seligman on optimism. He points out that pessimists think things are:

Permanent – this will never end

Pervasive – everything has gone wrong

Personal – it’s my fault

And that’s precisely what I have to avoid. Optimists, on the other hand think:

This is a one off, temporary setback

There’s lots of areas in my life that work

I am bright enough to deal with this

in spite of my father who was a triumphant pessimist, stating that when something went right it was such a pleasant surprise, I try to live on the optimistic side. And I am content.

Friday, 30 March 2012

Hot on the heels of Martin Seligman and Learned Optimism, I am back to Modern Buddhism. Am shocked at the author’s description of human suffering. Rather like Christianity’s emphasis on original sin, Gyatso wallows in suffering, starting in utero, when the fetus apparently feels as if on the rack, in a permanent state of terror, let alone a resounding smack on the buttocks at birth.

Talk of learned pessimism! I always, when pregnant, flattered myself that our babies were lapped in luxury, fed, rocked with personally supplied springing from slightly sagging muscles. Why can’t one presume a joyous ground to our being? The light in our baby daughter’s face each morning, her delighted laughter when I danced with her in my arms surely speak of an innocent joy welling from within her. Yes, we go wrong, but don’t we start in Eden?

Easter Sunday

A friend asked me for steps for coping with pain – a one, two, three. Which I said was impossible as the whole process is organic, not catalogued. But have had a bad time lately and been very discouraged today, which forced me to yank myself out of the spiral of despair. So I watched what happened so I can tell her.

The Pain Clinic has been disastrous. (Aside – I curse Apple’s intuitive spelling, but sometimes it is rewarding. It insisted on putting “sin clinic”. I caught it, but did wonder if it might have been much more fun than the Pain Clinic. Would it be a betasseled, red plush bordello, such a contrast with the khaki clinic – what would you do there?)

The drugs not only zonked me and barely touched the pain, but the NSAID suppositories, that my doctor swore wouldn’t affect my digestive tract, did. I only used 4 over to weeks, not every six hours as prescribed. They gave about an hour’s relief each. However, my digestive tract is back to square one, burning, cramping and hurting.

The injections left my muscles in spasm and my sacrum locked. Have had ten sessions of low level laser since with no improvement and my physio said it was the worst she had seen it.

So here we are at Easter. We had to cancel dinner with a friend after I had been awake two nights with cramps. We did manage a drink at a friend’s last night for an hour. She had bar stool type chairs at a counter, so with my back rest and the counter as a prop I managed an hour. However, today, my back is locked up tight in protest.

So it was one of those days where I could do something for ten minutes, then lie down. After lunch, with my stomach like a cauldron, I lay down to rest and listen to an audiobook. My mind kept spiraling down, probably because it is difficult to be distracted when the stomach is so insistent.

I caught myself going into pessimism, shades of Martin Seligman (see earlier entry), getting caught in a trough and being unable to see an immediate way out – or a long term solution. I have tried everything I can find and have run out of options, things that helped in the past have stopped working and each time my back and stomach fail, they never recover to the earlier level. I am inching down a hill.

“Above and Beyond!”. Those words have rescued me before. I have to find a place above the place of pain I am now in. Literally, pull myself up out of the mud of despair. I can feel where my consciousness is now physically. Like rising out of drizzle through clouds into sunlight, I can visualize a light, bright place where I could be. It is very hard to make the leap, probably because, neurologically, when you are in a particular state you can only easily access similar states. Which is why, if you learn something when you are drunk, you recall it better when drunk than sober.

But, I have found that if you can forcibly make that first mud-sucking step, then it is much easier remaining up in a positive place.

I then listened to a hypnosis CD track for IBS (irritable bowel syndrome) which soothed my stomach. The tearful feeling was gone and the spiraling self-talk stopped. I then came downstairs and did something practical, which was sending information on autism to a friend. It was very helpful that the focus was on someone else, not me.

We went for a walk, I cut up vegs for supper, wrote this and am going to go upstairs and do an Open Focus meditation to try and reduce the pain, take the small amount of codeine I can tolerate and be ready for friends to come for drinks. I have my zero-gravity chair here, so as long as I don’t have to sit too long, I can do it. I don’t know if this is any help to my friend, but it is what it was like and how I managed to turn things around.

While changing, was struck by how fortuitous (and I do mean by chance, not fortunate!) it is that we have characteristics that work with the handicaps I have. We tend to be people of habit, so a more restricted diet doesn’t worry us. We grew up in post-war Britain, where a diet of brown Windsor soup, cabbage and gray meat numbed our taste buds and although we did get biscuits, and puddings (not glamorous enough for dessert, when they have names like spotted dick) there was not the dessert culture of North America. So we are not only thin, but also don’t crave chocolate.

I was brought up to “be seen and not heard” so developed a vivid imagination, a love of books and the ability to be happy in my own company. All this makes the simplicity and deep peace of our life very satisfactory.

Saturday, March 31 1012

Went to visit a 96 year-old friend who has broken her hip. Struck with the noise of the convalescent home, crashing, banging and a cheerful porter called Wayne, who I think must be deaf from his volume, with a voice like a buzz-saw and reverberating bonhomie, who seemed to be everywhere – especially the elevators. Have always thought you have to be fighting fit to survive hospital.

In contrast, she lay still on her bed. She held my hand and didn’t let go. “I am so tired.”

Later – watching The Story of Science with Michael Mosely. Was struck at the insignificance of man, ant-like, industrious, questing, emotional in the vast impersonality of a cold, uncaring universe. Remember standing at a friend’s funeral, impacted by the pathos of our tremulous efforts to comfort ourselves. How we sang, prayed, drew together, huge in grief, microscopic in space.

How intolerable the loneliness of our blue earth, hurtling somewhere into infinity. And what doesn’t jibe with this bleak picture is that we, busy on our blue bubble, also show compassion and love. Where does it come from? What inspires it? Why will we die for country, love or belief? This is where, although I accept the scientific picture, the atheist does not make sense.

My back hurts from sitting at the hospital and my friend’s words play in my heart. Yes, she is tired – a deep weariness at the end of life – nothing that sleep will ease. She has done enough, yet gallantly, without complaint, she hangs in there, day after weary day, too tired to do much but wait. Yet dutifully enduring because “what can we do? You just get on with it.” A dulled determination that requires much more courage than valour on a battlefield. The heroism of the old, spinning through space on a planet to nowhere, yet dredging from her last energies the desire “to do it right.” Where does that come from?

And when I stand under an African night sky, drenched in dark, pinprick lit by stars, or on the cottage deck at night, I am not afraid of the space, just lost in its magnificence.

Tuesday, 10 April 2012

Back very bad. The first time I have rated pain at a 9, so observing how I cope to pass it on to my friend.

First, I have to tell myself that every day is not like this, notice am instinctively avoiding the pessimism pitfalls observed by Martin Seligman, labeling it:

Permanent – it will always be like this

Pervasive – everything is bad

Personal – it is my fault

On the whole, telling myself something firmly doesn’t work too well – I think I don’t convince myself and also feel pushed, which has always made me mulish! So what I have to do is move my being out of the trough of pain to a place “above and beyond”, something that seemed almost impossible at first, but is getting easier each time. Now I know that place exists and that I can choose to be there. It cuts away the clutter of negative thought.

Then look for wiggle room – there must be some action I can take. Today, codeine and Open Focus. The codeine made no difference, so two hours later I did Open Focus and that helped a lot.

It is important that I am flexible and mix and match what I do. After all, it doesn’t matter if I stop after peeling carrots and lie down and play patience for a time, then go back to chop beans. Unless I allow it to matter.

It really helps to keep an accepting frame of mind. I mind everything much more if I am comparing what I can do with other people. I read an interesting book that suggested that depression, which is far higher in the have countries, is exacerbated because we compare ourselves all the time with others. So we are not as interested in how good our car is as we are in whether our neighbour has a better one! So I have to try to concentrate on the enjoyment of what I am doing, which may be very trivial, not what I think my neighbour is doing, like lunch out, volunteering or shopping with friends.

Am trying hard to have a peaceful, accepting frame of mind, that doesn’t kick against the pricks. Also very important to be able to help others – takes me out of victim role and makes me feel useful, a great antidote. Today was able to send research on sinus infections and also listen too, via email, a friend’s family problems and offer some consolation.

Don’t know if this answers my friend – and if it is any help. I hope it doesn’t come across self-satisfied, because it certainly is the fruit of months of mental questioning, trial and a lot of error. It worked today, but it has to continue working for years to come. I hope it will and that life will still be deeply rewarding then.

Wednesday, 12 April 2012

Very interesting article by Barbara Wamboldt in the Kingston Whig Standard about her personal experience with Oxycocet. (Full article)

Facing chronic pain, she was assured by her pain specialist, as I have been, that if taking it for pain, she would not become addicted. Of course, he was wrong and she underwent hell subsequently in withdrawal.

Snap – a friend of my daughter is currently being detoxed from her pain killers. Another friend reports she felt numbed and lifeless the whole time she was on them. I have resisted long-acting opioids for just these reasons. Sometimes I wonder if I am crazy to pass up the chance of pain relief, yet I am scared of where it might lead me.

Interestingly, my various chiropractors and physios have all advised against the OxyContin route, urging me to find any other way of coping with pain.

Sunday, 14 April 2012

Today Thea, a tabby kitten arrived. She comes from a young family, 6 weeks old, very talkative and endlessly wanting what our elder daughter called “knee.” We are now in a sea of cheap plastic toys bought hurriedly from the Salvation Army Store, crumpled paper bags which she likes exploring, and things dangling on pieces of string. In the middle, Thea is composed, in charge and very affectionate. She has a foot fetish and spends much time head first inside any shoe she can find.

While juggling Thea and reading New Scientist, I came across a letter from Sandra Baron in Santa Cruz, CA. She suggested that our innate love of music comes from our brains’ constant need both to see patterns and for stimulation, married to “our innate sense of rhythm from the metronome in our chests.”

Makes me then wonder what modern music says about the hyperaroused teenage brains today.

Tuesday, 17 April 2012

Watched The Choir, the series where choirmaster Gavin Malone took a group of British Army wives whose husbands were serving overseas in Afghanistan and formed a choir which performed for Remembrance Day at the Royal Albert Hall in London. (link)

As Gavin said, the wives were unheard, living in drab married quarters, moving every few years. He wanted to give them a voice.

I was a military wife back in the Sixties and am appalled to see that, even after women’s lib, so little has changed. Sure, these women were able to talk to the BBC, something we could never have done, but what they said was heartbreakingly familiar.

Loneliness, isolation, fear, feeling unseen and unrecognized by the civilian world – all so familiar.

Back then, we didn’t talk of the fear. Not with our husbands – if the danger was recognized, put into words, they couldn’t carry on risking their lives. It was unspoken, the elephant in the room. So we waited long nights – you could tell which husbands were away, by the late-burning bedroom lights. We dreaded a knock on the door. We worried, but we didn’t speak.

I remember waiting up one night, when the flying conditions were clear, but he was inexplicably late, wondering how I would feed my kids, how we would survive on £3,000 life insurance. Sounds callous, but beneath my tigrish fight for my children, a river of heartbreak flowed.

I remember cooking lunch and hearing over the radio that there had been a mid-air collision at the base. Next of kin had not yet been informed – and he was flying that morning. I remember a ring at the door one night, the dark shape of a uniform glimpsed through the glassed front door. The walk down the long hall seemed frozen in time, each step slow like a dream, yet inexorable. With damp hands, I fumbled the catch: a policeman stood there. “You’ve left your lights on, miss”. Light with relief, but feeling way older, I walked back up the passage and hugged my sleeping daughter.

We felt unheard, yet we didn’t speak. Partly because of the social climate, particularly in the UK where one educated the boys and the girls didn’t matter. After all, they would get married! My father felt a university education “would make you discontented.” Even those women who did get ahead were paid less for their work than a comparable man.

I think this annulling of one’s worth bit deep. We all knew our futures depended on our husband’s survival, let alone his success. We also knew that a mouthy wife could sink her husband’s future.

I remember a magazine asking me to write an article about life as a service wife with the spin: “apart, yet we are together.” I refused to write it. There was no togetherness about 18 month separations, about not voicing one’s deepest fears or about always writing cheerful letters (years before email). You never wrote bad news because a worried pilot is accident prone. Likewise, he never it up for the kids at night because he mustn’t be tired while flying. It was hard not to get the message that when it came to needs, you were bottom of the pecking order.

Even when we wives chatted, I never remember our ever talking about our fears. Partly because we were expected to “carry on”, partly because we were afraid of being bad wives who seemed not to cope. But mostly, I think, because if we had relaxed our guard and self-control, the carefully constructed edifice would have crashed and we would not have been able to go on.

Yet, oddly, during those eight years of terror and reunion, I only knew one marriage that broke. There’s something about never knowing if your husband will return that night that powerfully concentrates the mind and puts things into proportion.

Life was indeed “tragedy to the sound of trumpets.” A quotation I found one night when we had to go to a glittering official cocktail party on board ship in Grand Harbour, Malta, amid the floodlit battlements, accompanied by the Royal Marine Band. Smiles in place, heads high, we stood dutifully, hearts heavy with the knowledge earlier that day that two friends had been killed.

I watched the military wives singing their hearts out – so little has changed.

Friday, 20 April 2012

Frustration! I am now two weeks off the test for the sacral nerve ablation. The Pain Clinic has expressed deep reservations over doing it on me, I can’t tolerate opioid painkillers or morphine. So the ablation is my last chance.

However, a ray of hope: I read in the local paper about a neurofeedback clinic in town, which the columnist said had worked with is pain when everything else failed. My ears pricked – Open Focus had worked better than anything else with me, so neurofeedback might well be an answer.

Phone. They could see me at once provided my GP would refer me. Then I would have an idea whether it might work – and, if so I could let the ablation go. It is run by medical doctors as a private clinic, so my GP would not have to weigh the cost to the health service. It is drug-free, what have I to lose (apart from cash!). All she has to do is scribble on a prescription form. They do not need a history, just my details and a reason for referral. So I don’t feel it unreasonable to phone her office to ask.

That was 8 days ago. I called again yesterday and was told, “It’s on her desk and she knows about it.” She was also leaving on holiday last night,

Today I called the neurofeedback clinic – no referral. I have lost the window before the ablation.

Does it mean she was too busy? But a week is surely long enough for a scribbled note. Or thinks it is flaky? Or feels I am dictating? Yet, she is busy and I didn’t want to take her time over something so quick. The clinic has actually suggested I made a phone request.

Why is it so difficult to help oneself? I try so hard to be positive, to find hope, to help myself, to find solutions. Why is one so often stymied by the medical machine?

Saturday, 21 April 2012

There is a God! On a chance I emailed the Pain Clinic doctor asking for a referral to the Neurofeedback Clinic. He replied by return that he will do it first thing Monday! What a difference in reactions and how buoyantly my spirits respond to his helpfulness.

Book sale at the Seniors’ Centre. Picked up Freedom from Pain by Norman J. Marcus MD, medical director of The New York Pain Treatment Program, Lenox Hill Hospital.

Incredibly encouraged by his descriptions of typical chronic pain (which sound awful, daunting and I am dreadfully sorry for the people he described). But they are NOT like my experience. Apparently, I have done the right thing refusing the drug route, keeping as active as I can, trying my hardest (and it is often almost impossibly hard) not to sink into pessimism. The first step, he says, is to control our self-talk. So instinctively I have been on the right path. Am feeling incredibly optimistic. Yet, yesterday was crying hopelessly in the washroom and today have renewed spirit and resolve to find a way. Must remember this next time I am down.

Sunday, 21 April 2012

Still reading Freedom from Pain. Very interesting as it is a drug-free approach. Whether it will work or not is another matter, but I am prejudiced in favour as it does support what I instinctively feel is right. Yet, I haven’t had much success, so who knows what is right?

He talks about the importance of abdominal breathing, which is old hat from meditation and stress management seminars. But his angle is interesting: that shallow breathing tightens muscles which increases pain. (Info on how to do abdominal breathing.)

Most interesting of all is his clear explanation of the pain gate cycle. The damaged part sends information to the brain, which processes the feeling through memories, emotional reactions and also deductions from how you are standing and moving. This altered information is sent back down through the spinal chord where it is felt as pain. He shows it in a diagram with gates between each section.

He also, for which I am grateful, says definitely that this does NOT mean pain is all in the mind, which is what my pain specialist also stressed.

But what is most interesting, and I haven’t found anywhere else, is his belief that you can affect the gates by your posture and emotions. If you are stressed, say late against traffic or had a row with your partner, then the gates will be wider open and your pain ratcheted up. He suggests you can at least make choices that keep the gates from opening wider. I wish I could quote more directly from the book, but I can’t because of copyright.

What I can do, though, is try some of his suggestions and report how it goes. To start with, I am going to:

Move as if pain-free

Try to belly breathe, keeping shoulders still – remember to check during the day

Walk and move young – not with hands in pocket

Keep my shoulders down, not hunched or bowed

I am also going to try to avoid “should” – either telling myself I should or shouldn’t do something or thinking others should have reacted towards me in a particular way. I will try and hang looser and state preferences rather than “should”, “must” or “have to”.

It’s a beginning and gives me new hope. Anything that gives me a possibility to move forward, something that I can DO, makes me buoyant and joyful for the future.

Monday, 22 April 2012

That best portion of a good man’s life,

His little, nameless, unremembered acts,

Of kindness and of love.

William Wordsworth

Just came on this last night and was so struck by its description of my husband. He does many small acts of kindness, generously each day. I cannot remember an unkind act, hasty perhaps, irritated at times, but never unkind.

It is as natural to him as breathing, as is his love of small animals. Large hands cradling a kitten, a card drawn for a friend, immediate help with heavy doors. All small of themselves, but they do truly make up a good man’s life. And it has been my privilege to live with a good and modest man.

At the moment I can hear kitchen noises accompanied by soothing conversation with Thea who has discovered climbing the Venetian blinds, noisily clattering and hugely satisfactory for jumping on my head at breakfast. Little chirrups answer him.

Tuesday, 23 April 2012

Dr. Marcus’s advice seems to help. Am much more consciously watching my posture, walking without my hands in my pockets and checking my breathing. It really is easier not to feel pain if I can manage to move as if pain-free, even if it is really hurting and dragging to move. This is pure NLP (neuro-linguistic programming), where you are taught to put your body in a resourceful posture, and particularly to breathe as you do when feeling strong and capable.

When I first started public speaking, sometimes it would go well and othertimes I fumbled my words or got lost in my notes. And I never knew which to expect. So one day I purposely remembered three times that my speaking had gone well and I had felt resourceful. I used all my senses to imprint the moment, then when it was really strong, I made an anchor (for how to do this, see NLP Exercise page).

My anchor was to say “thank you” and step forward. I was always introduced and I always thanked and moved forward to the mic. So the anchor was built in to the activity. It was so successful that I only had to start making a speech to become resourceful and the best way of changing a down, negative mood was to rehearse a speech.

When my mother was dying, was a very hard time for me. I was 5,000 miles from home, trying to support my father. I have never felt so icily alone in my life and it took all my strength each day to keep going in the face of each new challenge. So each morning, before I even got out of bed, I made a point of remembering three occasions when I had felt resourceful and competent. I got each impression as vivid as possible and then made a fist and said “strong” to myself. Then as each new crisis broke, I repeated my anchor and the strength and resolve flooded in.

I used the same trick again later when on the receiving end of spite and submarine tactics at work and noticed it was on the days when I did not make my anchor that my fellow worker attacked. It makes sense, after all, bullies don’t bully everyone, they choose their targets. So by deliberately making myself resourceful, I changed the balance and staved off the attacks. In the long run, I couldn’t turn round the underlying enmity, but being resourceful did prevent overt attacks.

So if it works for morale, why not try it for pain? Act as if I am pain-free, move as if I am pain-free and feed that message to my brain, which then, hopefully, will process the pain signals more softly and stop throwing the pain gates wide open.

Friday, 4 May 2012

Just reading Elizabeth Buchan’s Perfect Love – in the bath, just before Thea fell in! She observed that “our characters are shaped as much by those we hate as those we profess to love.” Interesting – perhaps hatred warps us more than love sculpts.

And, thinking more, are there two kinds of hatred: offensive, where hate fuels smoldering cruelty, and defensive, where one is the shrinking recipient. Certainly, being on the receiving end has made me understand the power of witch doctors. The evil eye is truly named as being icily watched distorts, diminishes as surely as if the person loathing were sticking pins into a wax image.

Yes, it shapes us. Do we break? Do we descend to their level? Or, if we try to bridge the enmity, in desperate determination not to become like them, does this make us stronger or merely self-righteous? But changed we are.

Wednesday, 9 May 2012

Have been working on moving as if not in pain and it really works. NLP always stresses the connection between how you stand and move and how that makes you feel. (See 28 February, 18 March and 9 May.)

At stress management courses, I used to run an exercise where I asked the group to stand and think of something that made them smile. To encourage them, I gave them a thought for the day:

“Did you know that 90% of company presidents are impotent and constipated?”.

When they were laughing, I then asked them to feel depressed – and, of course, they couldn’t.

It worked well until one time my audience of 100 was almost paralytic. This puzzled me, as it was funny, but not THAT funny! Until I was later introduced to the company president who had been sitting in the front row.

The moving as if not in pain is really helping. Today, my husband said he watched me walking ahead of him as if I were a young woman. And all the time, I had been consciously saying to myself, “Walk as if it doesn’t hurt.” Which it did, but I kept going longer.

Even more, has been the spin off for mood. Just moving as if pain-free makes me feel more capable and cheerful. Not that I was particularly downhearted before, but the consistent resourceful feeling is a real bonus.

So much is my choice. I was walking round the (huge) grocery store past all the foods I can’t eat, which is most of them. Very tempting to feel sad or to compare my range with anyone else’s. But the choice is mine and I can waste my energy thinking of what might have been or concentrate on something else – and it does work.

I have found tricks with dealing with a very restricted diet. When we shop together, I choose the produce and he does the aisles that require more walking and are packed with forbidden foods.

The other really good one for morale was when, early on, I threw away my cookery books and, instead, clipped any normal recipe I found that I could eat. I put them all in large photograph albums so that whenever I want a recipe for, perhaps, salmon or curry, I only choose from possible alternatives. Before that, I was overwhelmed by barriers and my persona became a “have not.”. Sure, I would love to eat certain foods, or anyway be able to go out for a meal easily, but I do have a choice as to whether I let it eat me up. Of course, I know what the foods taste like, and it is amazing how many people restaurant describe meals to me in mouthwatering detail before saying, “Of course, you couldn’t eat that!” I do wonder why we are talking about it then. And sometimes, I remember the taste and feel of a food, like chocolate, in exquisite detail – visiting it, so to speak. But always, the choice is mine – and when moving as if joyful and pain-free, it is much easier to make.

Saturday, 13 May 2012

Reading Spontaneous Happiness by Andrew Weil, chosen not because of “happiness” in its title, but because he is always worth reading.

He feels that the key to mental equilibrium is contentment, quoting Chinese philosopherLao Tze “one who contains content, remains content.”

That is really interesting because we tend to have a personal happiness set point, rather like a weight one. People who have had life-changing injuries, like paraplegia, within three months are back to their normal emotional set point, though you would think they would be plunged into unremitting depression. Also identical twins raised apart have a similar happiness set point, independent of their adoptive families. (More info) When I was pregnant, my one wish for my baby was that she would inherit my mother’s mother’s positivity, not my other grandmother’s apathy and negativity.

But one can change one’s set point. In Train Your Mind, Change Your Brain, Sharon Begley explains that we can change our brains – they are not set in stone, quietly running downhill from our twenties. For years, stroke patients weren’t given long term therapy as it was believed that the brain couldn’t rewire. But, of course, it can and today people are making amazing comebacks after brain injury.

So surely we can reset our happiness set point. According to Martin Seligman and Andrew Weil, we can. I have found that, as I have said on May 8 (Good Moves) just walking and behaving as if I feel no pain has a profound, deep effect on my general feeling of well being. Also catching and stopping myself ruminating on what’s wrong, prevents a downward spiral. And, of course, once you are in a depressed frame of mind, it is very difficult to access positive memories.

A friend who called me today, answering my question “How are you?” with a glum description. I realized that she always starts from the negative, which gave me a glimpse into her self-talk. How heavy and dreary and so hard to recover from.

According to Andrew Weil, who although he is meant to be writing on happiness, seems to be concentrating on depression, psychiatrists today do not make allowance for depressing life events, except bereavement, when you are allowed two months unhappiness.

How extraordinary! We are creatures formed by sun and shadow, learning from and enriched by life. We can’t be fully human if we live in unthinking happiness 24/7. Years ago, one of my English students stayed after class, pouring out his story of depression. His doctor had been trying a variety of drugs with no effect. As his misery flowed, it was obvious that anyone in his situation would be miserable.

“No wonder you are depressed,” I said robustly. “Anyone would be. Your life is depressing! Do something to change it.” Which actually was possible, not easy, but doable once he saw that his circumstances were the problem. Not some flaw in him because he couldn’t accept, deep within him, what was happening to him. He was entitled to better, not to be “fixed.”

A long gap. My sister came to stay and immediately afterwards we started tearing the bathroom apart, so are living in barely controlled chaos. Not helped by finding dry rot in a corner of the bathroom, necessitating taking the front corner off the house. Today we unwrapped the new bath to find a huge crack down the side. A helpful expert in bath repair commented sagely that it must have been dropped off the back of a truck! Rushed back to the store with the bath sticking out the back of the car like a reverse pregnancy and bargained a replacement. Of course, it was discontinued unless you special order it in avocado!

Having sat in a floor model amidst a whirlpool of shoppers and trolleys piled drunkenly with packages, like a woman with her hat on crooked, we settled for the next model up at 20% off.

All very character building and accompanied by hauling Thea out of holes on the floor. She has taken on the role of supervisor and is intensely interested in all the activity.

Which makes me appreciate my latest pain therapies, HeartMath and neurofeedback. HeartMath involves conscious even breathing while hooked up to a program that shows your heart rate. This balances the two strands of the autonomic nervous system: the sympathetic, which provides energy and nutrients, responds to stress and can easily overdo it; and the parasympathetic which calms it down. Breathing in activates the sympathetic and breathing out the parasympathetic. Which is why so many breathing exercises, like Dr. Andrew Weil’s 4-7-8 emphasize a longer out breath.

HeartMath, aided by a clever visual of a ball rolling up and down a slope, evens out your breathing and I find I can easily visualize the ball’s movement and breathe with it. I did a lot in the hardware store today!I

Neurofeedback has been very interesting. I have had three sessions: the first was just a trial 15 minutes, which left me calm, spaced and had the immediate result of giving me much deeper sleep. I have always been a really poor sleeper and have reluctantly taken phenergan at night for years. I have tried to cut it back but always been driven back by exhaustion. Within 3 days of my first neurofeedback session, I cut the dose in half and have maintained on the lower dose. Am now, hopefully, going to cut it further.

The second session left me reeling and stunned – an excess of stimulus, though to be fair, I am super sensitive. (When I went to Aladdin I had to lie down for half an hour afterwards to recover.) But later that evening, I felt very peaceful. The third session today was shorter and I came out calm. Although the rest of the day was jerky and stressful, my inner calm was more easily restored.

But what I have noticed most is that, although my back pain was severe by the end of our shopping trip, I recovered fast and was active again soon. Now I think back, I have been able to push my back more and recover quicker since starting the therapy. Will it keep up? I don’t know. I have had so many hopeful moments dashed, but there’s a glimmer of light.

Saturday, 2 June 2012

Watched the Jubilee Boat Parade. The Canaletto of ships spread like a tapestry. Tower bridge arms open wide. Somehow evocative of all that Britain does best, the guts of war, the little ships at Dunkirk, the majesty of royal pomp – and what Britain has lost. I don’t mean empire, though I remember as a child looking at a globe where one quarter was colored red for Britain, but the sense of who we are, the pride in endurance – exemplified by the 90-year-old Duke of Edinburgh, standing to attention for 80 minutes in the drizzling rain though sick enough to be helicoptered to hospital immediately after.

Duty is in his bones. What else would he do? That’s what we used to do, stiffened by tradition and service, or wry cockney humour through the Blitz. My aunt, before she died at 100, spoke of the post-war years with her husband, home from prisoner of war camp, forever changed.

“We never spoke of it,” she said. “It was best.” And her lips folded in resolve. Unbelievable to today’s world, but totally understandable to anyone with memories of the war.

Which makes me think how strange is memory. We carry not only our own memories, but by osmosis the era of our parents. War, air raids, bombed cities fringe my earliest memories along with driving through darkened streets and sitting on my father’s shoulders in the crowd outside Buckingham Palace on VE Day. Mistier but stretching back, lit by the emotion of my parents’ experiences, is the ’29 stock exchange crash, which ruined my grandparents, the bleak ’30s. Cameos of horse-drawn milk carts, rag and bone men, straw put in the street to hush the clang of hooves when my grandfather lay dying and a feeling of endless sunshine, somewhere far back with hawthorne blossom, orchards and later the lazy drone of a lone aircraft.

I was so very glad that the Military Wives helped write the Jubilee Song and sang it at the Jubilee Concert. They, so simply, represent the courage and endurance of Britain.

Thursday, 21 June 2012

Usual end-of-the-day summing up – and the usual question, which I can remember stretching back over many years, where is the coherent thread? What does a lifetime amount to? Is it a series of activities, is it one huge objective (which I certainly can’t claim), is it the timbre of one’s living? I used to set a benchmark: what will I feel looking back at age 60? Which seemed an impossible age, something other people, grizzled in the attempt, finally achieved. Now I have passed it, with a feeling of incredulous surprise, I am glad of the direction that question gave me.

But what is the answer? Certainly not stuff! Or activities – the sum of a life cannot be a series of sky dives through sensation, or acquisitions acreting in the basement. It has to be “being through doing”, that is, a continuity of small actions, eventually building a larger picture, which is NOT self-admiration or personal ambition, but an ambiance around one’s life of warmth and kindness.

Most of the time when we do bucket list things we are looking for a feeling. Sunset over the Golden Gate Bridge gives me a feeling of being stopped in time, like taking a still shot out of a movie. The buzz of petty action stops and I am suspended in time, bathed in grace. Surely, the art of living is to be able to access this state without the need to travel miles, belching out fuel. We can get it at a nearby lake – if we stop the clock of everyday life and, using every sense, simply look.

As I pondered, a thought whispered through my head: it’s so simple, all you have to do is “be love”. Whoa! Back up and examine! Not dogsbody, enabling love, not the being-walked-all-over, schmaltzy warm fuzzy. But just to live within one’s boundaries, whole and loving, so that each act is clean and kind. Shades of my beloved Brother Lawrence, joyfully pottering in his C16 kitchen to the glory of God. (See Practicing the Presence – 12 January)

We were at a 95th birthday party last weekend and I, on the spur of the moment, toasted our friend’s dead husband. It was a small group, just 6 of us, including two grandchildren, which led to conversation on personal legacies. I said that the greatest, to me, was example. Frank had been upright and enduring. I often think of his personal standards along with his wry sense of humour. It seems the biggest gift you can leave your grandchildren – a beacon for when they hit rough times.

I often think of my parents braving the Blitz, my mother phoning my grandmother each morning to see if she was still alive. When I lay in hospital years ago, having been told we were unlikely ever to have children, I reached out to my dead grandmother. She had been there, in my shoes, before going on to have four kids. I felt her close to me as, defiant in the face of fate, I said, “See you in 9 months!” The doctors looked at me pityingly, but 10 months later I was back, a baby in my arms. Thanks, Granny.

My husband is rereading Lewin on Greenwhich: the authorized biography of Admiral of the Fleet Lord Lewin. He served under him in HMS Hermes back in the ’60s and always speaks of him with respect, affection and awe. How he took a carrier with 5 deaths in the first 2 weeks at sea, pulled up morale and commanded a mixed bag of 2,500 pilots, seamen and engineers, the average age being 20, never raising his voice. And how 28 years later, when my husband wrote to him, Lewin remembered him and our baby daughter by name. Here, par excellence, is someone who blended doing and being with grace. And he will be remembered by us, not so much for his achievements as for the person he was.

So my answer to myself, I cannot speak to anyone else, must be that the ambiance, the general tone to a life, built up as best one can through countless small acts, is what counts, not scaling Everest. And for the big push to achievement, the life ambition, then it has to be to leave a step hewn in humanity’s long climb. The one small step for a human in one great staircase for mankind.

Tuesday, 26 June 2012

Reading Bad Animals: a Father’s Accidental Education in Autism by Joel Yanofsky. A raw account of trying to come to terms with his son’s autism, something I can understand from the inside, having a severely autistic brother. But what interests me the most is his anger with those mothers who try to find a silver lining. In particular, he is enraged by Welcome to Hollandby Emily Perl Kingsley.

Of course, it doesn’t spill the blood and guts of daily living with despair. She has to find a way to explain her life to herself that she can live with. I know – it’s what I do with pain. So perhaps this blog is equally infuriating to other chronic pain sufferers. If so, I am sorry because the last thing I want is to add to their burden.

But I do understand where Emily is coming from. I know what it is like to find yourself living someone else’s life, that of a handicapped, invalid (have you ever thought of the meaning of that word NOT valid?), when inside I am still a supple, hopeful girl. I know that the only way to cope for me (though, of course, at times I rage) is to stay in a sunlit room, to shut the pain gates with as much joy as I can muster. I remember lying weeping in a San Francisco hotel room, my longed for holiday slipping away, in too much pain to walk or sit. Praying, “Please God help me; I cannot do this.” And somewhere dredging from my bones the will to look for something, anything of beauty – and outside our drab motel room was a dusty window box of geraniums, a splash of courage against urban gray.

“Look for the beauty,” I murmured over again – and a few hours later I could laugh and for a few minutes forget the pain. Because that is what it is like, living with despair. The life raft is hope – and every day you grasp it, knowing the only way on is to make a narrative of your life to yourself that is not pathetic. So, yes, I know Holland and it has brought strange blessings. I do the same as Emily because if I don’t I drown.

Friday, 8 June 2012

Absolute chaos! We are halfway through renovating the master bathroom. We have a disconnected bath, no vanity or toilet, just subfloor, part mudded walls and a ragged hole in the outside wall. Add to the mix an energetic kitten whose one ambition is to get under the floor boards, dust, boxes, and sheets of drywall all over the house and you have a fun recipe.

It is all go as tradesmen come and go in a weirdly synchronized dance. How they do it so good humouredly, I don’t know. Last night the plumber who was expected at 3.00 in the afternoon, finally got here at 9.15 at night, but still cheerful.

Today, the front has been taken off the house to expose encrusted rot. And we are enjoying it! Is it neurofeedback? I have never been able to roll with the punches like this. But as each catastrophe looms, I find myself calm and mentally shrugging my shoulders. I think it must be the neurofeedback as I was more thrown at the beginning and this blessed calm is since my last session.

What is interesting to observe is that when I don’t agitate over the situation, actually it is quite enjoyable. Everyone is obliging and cheerful and now I am not measuring everything against my expectations or demanding things happen as we planned, the days are pleasant and each day we can see progress.

It has been a lesson in how to let life unfold. When I look at all the holdups from a global perspective (and not just my urgent desire to get it done), then I can see quite clearly that each person is doing the best they can and not intending any disruption. Just hope I keep hold of the lesson and it doesn’t vanish into thin air. Let’s hope the neurofeedback lasts.

It also seems to help the pain. Am not pain-free. My back still hurts when I do too much, I still couldn’t sit through a movie and I still need to lie down several times a day. But the back recovers faster and the pain cycle doesn’t seem to get set the same way. A few weeks ago, if I sat or stood too long, my back flared and could hurt for days. Now, I lie down for half an hour and then go straight out and walk, cook, get on with my life. I am much more active and adventurous. Will it last or is it a flash in the pan? I don’t know, but I have hope and that is precious.

Thursday, 21 June 2012

Usual end-of-the-day summing up – and the usual question, which I can remember stretching back over many years, where is the coherent thread? What does a lifetime amount to? Is it a series of activities, is it one huge objective (which I certainly can’t claim), is it the timbre of one’s living? I used to set a benchmark: what will I feel looking back at age 60? Which seemed an impossible age, something other people, grizzled in the attempt, finally achieved. Now I have passed it, with a feeling of incredulous surprise, I am glad of the direction that question gave me.

But what is the answer? Certainly not stuff! Or activities – the sum of a life cannot be a series of sky dives through sensation, or acquisitions acreting in the basement. It has to be “being through doing”, that is, a continuity of small actions, eventually building a larger picture, which is NOT self-admiration or personal ambition, but an ambiance around one’s life of warmth and kindness.

Most of the time when we do bucket list things we are looking for a feeling. Sunset over the Golden Gate Bridge gives me a feeling of being stopped in time, like taking a still shot out of a movie. The buzz of petty action stops and I am suspended in time, bathed in grace. Surely, the art of living is to be able to access this state without the need to travel miles, belching out fuel. We can get it at a nearby lake – if we stop the clock of everyday life and, using every sense, simply look.

As I pondered, a thought whispered through my head: it’s so simple, all you have to do is “be love”. Whoa! Back up and examine! Not dogsbody, enabling love, not the being-walked-all-over, schmaltzy warm fuzzy. But just to live within one’s boundaries, whole and loving, so that each act is clean and kind. Shades of my beloved Brother Lawrence, joyfully pottering in his C16 kitchen to the glory of God. (See Practicing the Presence – 12 January)

We were at a 95th birthday party last weekend and I, on the spur of the moment, toasted our friend’s dead husband. It was a small group, just 6 of us, including two grandchildren, which led to conversation on personal legacies. I said that the greatest, to me, was example. Frank had been upright and enduring. I often think of his personal standards along with his wry sense of humour. It seems the biggest gift you can leave your grandchildren – a beacon for when they hit rough times.

I often think of my parents braving the Blitz, my mother phoning my grandmother each morning to see if she was still alive. When I lay in hospital years ago, having been told we were unlikely ever to have children, I reached out to my dead grandmother. She had been there, in my shoes, before going on to have four kids. I felt her close to me as, defiant in the face of fate, I said, “See you in 9 months!” The doctors looked at me pityingly, but 10 months later I was back, a baby in my arms. Thanks, Granny.

My husband is rereading Lewin of Greenwich: the authorized biography of Admiral of the Fleet, Lord Lewin. He served under him in HMS Hermes back in the ’60s and always speaks of him with respect, affection and awe. How he took a carrier with 5 deaths in the first 2 weeks at sea, pulled up morale and commanded a mixed bag of 2,500 pilots, seamen and engineers, the average age being 20, never raising his voice. And how 28 years later, when my husband wrote to him, Lewin remembered him and our baby daughter by name. Here, par excellence, is someone who blended doing and being with grace. And he will be remembered by us, not so much for his achievements as for the person he was.

So my answer to myself, I cannot speak to anyone else, must be that the ambiance, the general tone to a life, built up as best one can through countless small acts, is what counts, not scaling Everest. And for the big push to achievement, the life ambition, then it has to be to leave a step hewn in humanity’s long climb. The one small step for a human in one great staircase for mankind.

Tuesday, 26 June 2012

Reading Bad Animals: a Father’s Accidental Education in Autism by Joel Yanofsky. A raw account of trying to come to terms with his son’s autism, something I can understand from the inside, having a severely autistic brother. But what interests me the most is his anger with those mothers who try to find a silver lining. In particular, he is enraged by Welcome to Hollandby Emily Perl Kingsley.

Of course, it doesn’t spill the blood and guts of daily living with despair. She has to find a way to explain her life to herself that she can live with. I know – it’s what I do with pain. So perhaps this blog is equally infuriating to other chronic pain sufferers. If so, I am sorry because the last thing I want is to add to their burden.

But I do understand where Emily is coming from. I know what it is like to find yourself living someone else’s life, that of a handicapped, invalid (have you ever thought of the meaning of that word NOT valid?), when inside I am still a supple, hopeful girl. I know that the only way to cope for me (though, of course, at times I rage) is to stay in a sunlit room, to shut the pain gates with as much joy as I can muster. I remember lying weeping in a San Francisco hotel room, my longed for holiday slipping away, in too much pain to walk or sit. Praying, “Please God help me; I cannot do this.” And somewhere dredging from my bones the will to look for something, anything of beauty – and outside our drab motel room was a dusty window box of geraniums, a splash of courage against urban gray.

“Look for the beauty,” I murmured over again – and a few hours later I could laugh and for a few minutes forget the pain. Because that is what it is like, living with despair. The life raft is hope – and every day you grasp it, knowing the only way on is to make a narrative of your life to yourself that is not pathetic. So, yes, I know Holland and it has brought strange blessings. I do the same as Emily because if I don’t I drown.